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Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thank you and our story... but we are not that far yet!

Postby Dandygal76 » Tue Jan 31, 2017 4:18 pm

No dad, you couldn't just get pancreatic cancer. It had to spread to stage IV. You couldn't go through everything you have and just feel better for a little bit. You can have a CT scan yesterday with no sign of cancer in the liver and the body, the chemo etc did its job. You couldn't have just got a treatable spread of cancer to the brain from PC which the dr said today would have been the better outcome. Nope... the medics are all very shocked... Paraneoplastic Syndrome. Apparently his body is attacking itself. Bloody brilliant. x

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thank you and our story... but we are not that far yet!

Postby Dandygal76 » Tue Jan 31, 2017 6:41 pm

And thanks Veema. People do not always realise how much their contribution helps on this forum. I duly shut the hell up and took it on the chin. x

Quickasyoucan
Posts: 112
Joined: Tue Jan 17, 2017 10:06 pm

Re: Thank you and our story... but we are not that far yet!

Postby Quickasyoucan » Tue Jan 31, 2017 7:06 pm

DG I am sorry for your news. When mum was diagnosed with MND it felt like how could she get something we had only heard of through Stephen Hawking for which there is basically no treatment. Now we are largely back there with dad. Life sucks sometimes. However your dad could not ask for a better warrior on his side x

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Thank you and our story... but we are not that far yet!

Postby Veema » Tue Jan 31, 2017 7:52 pm

Dandygal76 wrote:
> And thanks Veema. People do not always realise how much their contribution
> helps on this forum. I duly shut the hell up and took it on the chin. x

I hope I didn't upset you...I don't think you should take it on the chin...just breathe, count to 10 and respond in a way that means you won't regret anything later...if she wants to behave badly, that's up to her...you can be (and are) the bigger person.

I'm now off to Google that syndrome.

Huge hugs

Vx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thank you and our story... but we are not that far yet!

Postby Dandygal76 » Wed Feb 01, 2017 4:05 am

None of you could ever upset me. Sometimes it just takes someone saying something very simple to snap me out of the path I am on. Emotions interfere with rational decision making.

I have not been on google yet (how good am I!)

I have called the LOC for a consultation. This is not just my usual whims. The oncologist when I was there said it was v bad. Then the paliative care team round and said they are discussing with a consultant as not even sure if their treatment will be working as not dealt with it before but they are giving dad same drugs anyway. When I left the angel came round and told my mum and sister it was good news. Then another dr (hematology I think) came round and said they are not even sure if it is that.

I have just e-mailed the hospital and said... not being funny but why don't the 4 of you put your heads together and tell us a joint message because right now you are not being very helpful.

It def is not brain cancer though... they cannot control the symptoms at all. I just woke up, threw up with stress and I am going there now to make sure he is okay. x

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Thank you and our story... but we are not that far yet!

Postby Elaine123 » Wed Feb 01, 2017 8:24 am

Hi DG I am so sorry you are having all this messing around from four professionals who should be able to put their heads together and find the best way forward for your Dad. It's not only frustrating and stressful for you and your family but it's detrimental to your Dads care. Constantly thinking of you all especially your Dad. Take care and stay strong
Elaine
X

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thank you and our story... but we are not that far yet!

Postby Dandygal76 » Wed Feb 01, 2017 9:42 am

Okay... you probably all thought I was nuts going to the ward at 4am this morning but they have been truly rubbish. He had no fluids in the morning yesterday on checking him at 8am and regardless of the fact my mum and sister requested several times for fluids during the day he still had none 6 hours later. He was parched. So, I go out to the desk and said to them, I know you are busy and we are all trying to stay calm but if dad does not have fluids in the next 20 minutes I will sit by his bed and phone PALs and anyone else in management that will listen to me about his lack of care. It will be more hassle for you to deal with that than actually get him some fluids.

Then I find out (I should have checked) that the palliative care team had been out in the morning as well and the consultant had upped everything to help manage his symptoms and no one had actually implemented any of it. And his symptoms are bad. So, then I had to deal with that.

So, when I woke up this morning all I could imagine was him writing in head pain, constant sickness and thirst. I could not sit at home and worry about that. So, I trot into the ward and and no one battered an eyelid or said a word to me. He was also settled and with fluids and managed to moan about the nurses waking him up to do blood pressure all the time. If my dad has the strength to have a bit of a moan about small things then I tend to take that as a positive sign on the whole nd so I came back home and updated my mother she did not have to panic and things were calm.

We are still just in groundhog day though but a lumbar puncture at 12 and hopefully a formal diagnosis of what is going on. I will update you on whatever obscure rare thing it actually is and that is probably only usually found in giraffes or something. xx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thank you and our story... but we are not that far yet!

Postby Wife&Mum » Wed Feb 01, 2017 11:00 am

Oh boy, what a horrendous time for you. Just want you to know that you are very much in my thoughts at the moment and I hope the lumbar puncture gives answers that can be acted upon to give your Dad better quality and quantity of life.
Love and hugs
W&M xx

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Thank you and our story... but we are not that far yet!

Postby sandraW » Wed Feb 01, 2017 12:55 pm

Dandy, I would have done exactly the same in fact I probably wouldn't have come home.
He is your Dad and your priority, if he is not getting the correct care then you need to sort it out. All this makes me so very very sad, I feel so much for the poor people who have no one in their corner to fight for them, I had to be very careful when I was in the hospital with Trevor not to speak up when I saw whoever was in the room with him not getting the care they deserved. Sometimes though I couldn't help myself and I would have my say. Sending love to you all and you know we are thinking of you, love sandrax xx

Sandiemac
Posts: 69
Joined: Tue May 10, 2016 11:27 am

Re: Thank you and our story... but we are not that far yet!

Postby Sandiemac » Wed Feb 01, 2017 4:38 pm

This saga is beyond belief but thank goodness you still have your sense of humour! I wish you and your family all the strength necessary to cope with what is to come, good or bad. I too am checking in every day to see how you all are. Sandie xx

Marmalade

Re: Thank you and our story... but we are not that far yet!

Postby Marmalade » Wed Feb 01, 2017 8:12 pm

Dandy, you do whatever you feel you need to do. If you get completely ridiculous we will tell you, promise xx

As long as you are not disturbing other patients you come and go as you see fit. I've been reading up, I guess you have too, seems that it is mostly rubbish news but just like with PC, some respond exceptionally well. It's great that they are on the ball with the tests but there is little point if the nursing team leave him without basic care. I so agree with SandraW and my heart goes out to people on their own who don't have a partner of kids to chivvy people. It really is inhumane and we, as a nation should be ashamed. Your Dad has you lovely people and10 aunts (!) and uncle Tom Cobbley and all by the sound of it so plenty of reinforcements! I agree that moaning is a fairly good sign!

Don't worry about replying to stuff, we know you are exhausted and don't expect it, we also know you like to pop on and vent sometimes. We will all be here listening xxxx

Marmalade

Re: Thank you and our story... but we are not that far yet!

Postby Marmalade » Sat Feb 04, 2017 9:36 pm

Hi all,

I had a message from DG on her birthday to say that the hospital seem to be getting on top of her Dad's symptoms a bit now although he has become a bit jaundiced. He is also eating and drinking a bit which is better than it has been.

There is no news on where any treatment goes next yet and the family are just relieved that her Dad is not in such distress and pain while they all try and come to terms with the new situation and what if anything can be done.

Dandy describes it as being in a 'strange place' which of course it is, but she is with her family and even found the energy to cook them all a proper meal on her birthday. Well done DG, I have been eating biscuits for quite some time now so understand what a big deal that is.

Hope you all have a peaceful night

M xx

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Thank you and our story... but we are not that far yet!

Postby Elaine123 » Sun Feb 05, 2017 8:02 am

Thank you for the update M what a relief that they are getting on top of his symptoms and his pain has subsided a bit. What a horrendous week they have all had. How many twists and turns can this disease throw at people.....there seems to be no end to how cruel it can be.
Hope today is a better one for Leigha and her Dad.
Elaine
X
Last edited by Elaine123 on Sun Feb 05, 2017 8:06 am, edited 1 time in total.

Quickasyoucan
Posts: 112
Joined: Tue Jan 17, 2017 10:06 pm

Re: Thank you and our story... but we are not that far yet!

Postby Quickasyoucan » Wed Feb 08, 2017 3:55 am

Hi DG saw you were on line. Just wanted to say have been thinking of you and your dad. Mine isback in hospital again tho seems to be recovering again for now. I am flying to uk 2 weeks today. Sending best wishes.

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thank you and our story... but we are not that far yet!

Postby Dandygal76 » Wed Feb 08, 2017 4:00 am

I was going to say go to sleep but is day there isn't it? x